When I was diagnosed with Progressive Supranuclear Palsy (PSP), I was completely at a loss. Googling it was a mistake, the prognosis was grim, the stories were heartbreaking, and the tone was overwhelmingly bleak. Parkinson’s Disease (PD) didn’t feel much better. Neither diagnosis felt like a gift.
And to be honest, the speed of progression has been terrifying. Just 220 days after running a 5K, I now find myself excited about using an electric wheelchair. It’s surreal.
But something unexpected happened.
As I started sharing my story, through my blog and on platforms like HealthUnlocked.com and facebook groups (on groups that didn’t ban me for posting too much or including an outside link 😊), I began hearing from people all over the world. People with PSP, PD, and other aggressive neurological conditions reached out. Their stories weren’t just about struggle, they were about fighting back, adapting, and finding ways to live fully.
Yesterday, someone in Scotland told me they use a balance belt to get to the pub. Another person on a farm is thinking about using a gas-powered lawn mower to get around. These aren’t just clever workarounds, they’re acts of rebellion against limitation. They’re proof that people are still living, still laughing, still pushing forward.
Caregivers also write to me. They share how they care for their loved ones with fierce loyalty and love, even when things get unimaginably hard. Their strength is humbling.
I used to see this diagnosis as a wall of fear. Now, I see it as a fight. A fight filled with sorrow, frustration, and exhaustion, but also with humor, creativity, and sheer determination. The people I’ve met (virtually) are not just surviving, they’re adapting, resisting, and showing what it means to live on their own terms.
Some days, I consider myself successful when I shuffle slowly to the bathroom without needing to reach out to a wall to stop myself from falling. That’s the reality. And yet, even in those moments, there’s a sense of victory.
I don’t want to give the impression that it’s all resilience. We all cry. We all have terrible moments. There is pain, uncertainty, and huge sadness, for sure. I just expected those feelings to dominate everything. But what I’ve found is that they compete with something else: strength, fight, and unexpected lessons. People with one of these diseases don’t need to be pitied, they, and their families, can inspire. I’ve seen a kind of power and resolve in people I never imagined, especially in those navigating life from wheelchairs or with severe limitations. It’s changed how I see people, and how I see life.
People say they appreciate my writing, but the truth is, I get more from this community than I could ever give. The encouragement, the kindness, the shared resolve, it’s been life-changing.
And it’s not just PSP or PD. People with terminal cancer, ALS, and other life-altering conditions show the same fire. It’s that “back against the wall” moment that seems to bring out something primal and powerful in people. A kind of modern-day Blitz spirit.
So I just wanted to say thank you.
And to the person (or people) I may have nearly run over while on vacation with my electric wheelchair, my apologies! Thanks to those wheels and a trusty spare battery, my wife and I enjoyed cocktails by the beach yesterday, after learning the hard way to always check the charge!
